Elijah's Heart Journey: February 2012

Friday, February 24, 2012

36 weeks...

There isn't much new to report. As the doctor on Thursday said, we are just counting down until the induction date. Baby Elijah is continuing to grow and it looks like he weights 5lbs 12 oz which is a good size for his gestational age. I sat down with our nurse and we discussed some of what would happen when he is born. Because he is a single ventrical baby, they will most likely transfer him to CHLA very quickly. I will have to pump and CHLA will store the milk for when he can finally eat.

There are so many unknowns. After he has his surgery, his chest will be left open and he will be intubated. They can't tell me how long either will continue, it all depends on how he heals and tolerates everything. She said it could take few weeks or it could take a month. During that time he will be sedated and pain free. At least that is comforting. We will meet with the neonatal doctors next week to discuss their plan for him. They will be the team of doctors that will be in the delivery room to take care of Elijah immediately after birth. We are still waiting for the insurance to grant us the MRI and the final echo. I have no idea why they are stalling. Hopefully it will be approved soon and we can move forward. The more information they have now, the better and quicker they can treat Elijah later.

Sunday, February 12, 2012

Here we go!

We finally had our first appointments with the USC Fetal and Maternal Health Institute on Thursday. It was a very, very long day. We had an incredibly long wait and had to see two different doctors. All in all, things are looking good. Elijah is growing just as he should and we are now looking at an induction date of March 14th to deliver on March 15th. I believe that they will then schedule his surgery for the following Monday. It's all starting to become very real and scary. Dion has faith that everything will work out and things are going to fall into place. I have always been a positive person but I am really struggling with this one. I am petrified that things are not going to go well. I suppose we all just have to live in the moment and not worry about things we can't control. I have to go to weekly doctors appointments and see several doctors each time. They want me to have an MRI so that they can look at baby Elijah's brain. They said that this is standard with heart babies but I can't help but worry about what it could possibly mean. Again, I need to live in the moment and not in the possibilities.

Thursday, February 2, 2012

33 Weeks and Counting

So after a very long fight with our insurance company, we finally have appointments set up for next week with CHLA Fetal and Maternal Health for all of my doctor appointments. This has been such a trying time. I now understand why people get frustrated with insurance companies.

I am nervous to find out how Elijah is doing and if he is gaining enough weight. Hopefully, we will be able to schedule a tentative induction date at that appointment. As March gets closer, I find myself getting more emotional. The thought of not even getting to hold him, having him whisked away to the NICU, and possibly not seeing him for days is terrifying. The idea of your tiny little baby going in for open heart surgery is mind numbing to say the least. I am just scared and worried. I fear for Noah and all of the uncertainty this will all bring. I can't imagine the emotions that he will feel when his world gets turned upside down. There is just so much uncertainty and I struggle to find peace in the unknown.

The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."